Abstract

Background/Objectives: Siblings of children with the life-limiting disease Metachromatic Leukodystrophy (MLD) are growing up witnessing rapid disease progression and death, affecting development and psychological wellbeing. Family-centred palliative care should include sibling support, but research on sibling needs is scarce. This semi-structured interview study aims to describe parents’ perceptions of siblings’ behavioural adaptation, emotional reactions, and support needs. Methods: Seven parents recruited from a national resource centre for rare disorders participated in semi-structured interviews that were audiotaped and transcribed. Content analysis was used to identify recurrent themes.

Results: Siblings were described as more mature, patient, caring, appreciative, and sociable than other children due to life with the ill child. Expressions of love and concern, fear, sadness and sorrow, anger, and hope were described. Parents described how sibling support implies strengthening close family relations and providing resources at home, external support, and information.

Conclusion: This study shows that sibling support involves all instances surrounding the family and ill child, and that a family-centred, trauma-sensitive approach is needed.